Down Syndrome Centre

Afternoon, I recently did some work for DSC and we decided to use the interviews we did as standalone case studies and you can view them on youtube on the Down Syndrome Centre TV Channel

There are two types of parents, some availed of the Down Syndrome Liaison Nurse and some did not. It is encouraging to see 350+ unique views in just one week.

Walking!

Morning,

Cracking result today as Ava has finally made progress in her movement. Here is all the information which someone may find useful.

Ava has been slow to walk. She had been standing and cruising along furniture no problem but was very very cautious. We bought a little trolley from Ikea but again she was wise to the fact it might run away from her and she would fall. This had gone on for ages so yesterday we took action!

We tightened the wheels and put in a Tupperware box filled with sand (we can then adjust it if needs be by removing some). It was still too light so we added a box of detergent and this happened:-

Lester

A quick post on a website that was sent to me about an artist with DS called Lester.

http://www.lestermagoogan.co.uk/index.php/videos/films/film-by-animo-tv-dublin/

Looong Overdue Post :-/

I haven't checked the stats recently so not sure if people still make their way to this blog but sure will do an 'ol update anyway. It has been a few months so sorry :(
Life has been been very busy as we also have our little Dylan. Ava had a good summer but was definitely getting bored by the end of it. This seemed to manifest itself with a lot of shouting which we didn't enjoy much. We were hopeful that when she started creche and "second steps" class in her school that we would see this improve and hopefully see a start to the walking!

So Ava started her "Second Steps" class 4 days a week and also has creche two afternoons a week. We have seen a massive change (all for the good) in her since she started. She is super close to walking now and is definitely trying to talk more. The extra stimulation has her babbling and standing and generally really moving forward with more words etc. There was an adjustment period where a few tears appeared when she started back but these seem to have gone now (fingers crossed)

On another note the last few months have seen me do some more work with Down Syndrome Centre doing interviews with new parents discussing the most excellent Liaison Nurse plus general new parent case studies. They also ran a new parent night in Dublin which was well attended with 60+ people.

Got a reminder from a friend this morning about Punky a new animation series from Monster Animation. You can read more about it here. It launches early next year. The relevance here is that Punky is the first headlining cartoon character to have Down Syndrome. Punky lives with her Mother, Brother and Granny and gets up to all sorts of adventures and mischief! Sounds fab.
Punky will broadcast next year with twenty episodes, each seven minutes long.

Get Up Stand Up

Watch this.....
I can pull myself up now......on just about anything....and do so all day long...

It rocks!
So Ava is two and a bit and still no walking :/ Loads of the boys her age are *flying* around the place like mad and we are patiently waiting. The great part of meeting with other parents, especially those with older kids, is they reassure you it will come. In recent weeks Ava has been moving *loads* and can pull herself up and shuffle round like mad. We have to baby proof the house now (or move out which is not really an option to be honest).

Schoolwise Ava has finished "First Steps" in the super fantastic Kildarton and starts "Second Steps" in Autumn. Finally Ava is now attending a Creche over the Summer and is already in the 'settling in' week.

All in all she is coming along great I am happy to say.

I will endeavour to update the blog more going forward and bore you all with the details of Ava (Bear)

Buy my Dress / Ava in the Examiner!

The all important Buy my Dress campaign takes place this Thursday 20th in Dublin in Cork.

Full details at the (rather excellent) Down Syndrome Centre website. Funds from the event go towards a liaison nurse so spread the word! I was in the Down Syndrome Centre office's recently and it was pretty full on with Sheila and her staff working tirelessly to organise the event, surrounded by dresses everywhere. This was weeks ago so I imagine they are wrecked by now.Related to the event we gave an interview to the Examiner newspaper, we basically as parents were outlining how important it is to have a liaison nurse available when a child is born with DS so get out there and buy some dresses people.

All Grown Up! Two! Peppa Pig! School! Cake!

Morning,

Can't believe our Ava Bear is Two! Her birthday was at the start of April and we had all her friends over for cake and balloons!

Also today is a big day as Ava starts going to school on Wed as well as Monday. Her schedule is pretty jammed now with School Monday / Mothers Group on Tuesday / SKIP on Wed AM / School on Wed PM / Extra swimming sessions!. Busy busy especially for Duffo!

To celebrate this milestone she has a new schoolbag which will debut today.

Not all roses in the garden however in that although she is picking up loads of new Lamh and now saying "Yes" and understanding loads she has yet to master the ol walking but is slowly getting there.....not a moment too soon!

Ava Doin Her Thang!

Family Guy....

I watch Family Guy a lot. I even watch repeats I have seen before when there is nothing else on. I often am shocked at how they push the envelope and watched the 'Down Syndrome' episode with major trepidation.
Definitely not a good episode humor wise but I was not personally offended. I was pleased to see the character was played by a woman with Down Syndrome (Andrea Fay Friedman). I have watched Palin on Fox and also The View discussion and tried to get a sense of what people think out there.

Personally it appeared to me like inclusion with of course some jokes at her expense but they have done far worse in the past to other people and other disabilities (Michael J Fox etc).

Interesting Article from Irish Times 02.02.10

My sister gave me a heads up on this article from the Irish Times last week, well worth reading a good news story when you constantly hear about cuts.

Down Syndrome Centre ThinkTank

Evening All,

This morning myself and some other parents attended the Down Syndrome Centre Think Tank in PWC Offices in Dublin. The aim of the event was to outline challenges and solutions related to new parents and the first year of dealing with a child with DS. I gather this is the first of several Think Tanks.


We all got to input our thoughts on the kind of challenges one can expect and solutions to them. In addition we got to suggest resources we found useful and I even managed to hear some new ones myself. As with all such discussions there is always a tendency for parents (myself included) to focus on their own unique situation and ramble on. The unique format of the event, using a laptop based collaboration system, kept things mostly on track however and I think the key points were definitely captured.

Down Syndrome Centre should be commended as this was extremely well organised but this is what we have come to expect from this highly progressive organisation. I spoke with more than one parent who felt the same way afterwards. As a facebook user I am often delighted to see their informative articles appear on my news feed and they are also on twitter!

I'm Down With You

I saw this just now on Facebook (from Sophie McCaughey post) and *love* it, I really like the intro especially and how he describes people with down syndrome. Love it Love it. Hope you all enjoy it too.....

I'm Down with You from jagatjoti Singh Khalsa on Vimeo.